Backstory, part three

From here on out, my memory gets a lot hazier. I know that the day after Elijah's birth I got a loaner breast pump from the hospital—one of those huge blue hospital-grade Medelas. We got a briefing from the attending doctor on how much they knew about what was going on, which wasn’t much, at that point. The journal my mom kept for us says, on that day, His chin is very small, which is making it difficult to keep the airway open, and will make it difficult to feed him. They will try to figure out what to do about that tomorrow. At some point in here, too, we found out Elijah’s birth weight--4.2 pounds. But he was too fragile for too long to worry about much else: We never got a birth length, and we didn't get footprints until weeks later.

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We got to hold Elijah again on Thursday, December 8.

The white plastic under his nose is part of the ventilator tube, as are all the clear, blue, and pink plastic tubes and pieces that are going up from it. The blue arm board is helping to hold his IV in, and the tubing coming down from that is part of his IV line. The wires coming out from under my left arm are the leads.

We were told that he’d be in the hospital for two and a half months, and would need surgery—mandibular distraction—to make his lower jaw bigger so that he could breathe on his own.

We also met with the geneticist, who told us, after inquiring minutely into the details of Elijah’s birth, that he wasn’t comfortable with home births, but that our son could not have received any better care if he’d been born in the hospital. That man was a God-send.

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By Saturday, Elijah was getting tiny feedings of breast-milk administered through an NG tube.

He’d also been seen by an ENT (the one who would perform his distraction) and been diagnosed with a cleft palate. The admitting doc had missed it on his exam but the ENT found it.

This was a breaking point, for me. Though it probably sounds silly, I was exhausted, and new to the ICU universe and until then it hadn’t sunk in that there was something really wrong with our baby. I guess somehow a small jaw seemed to me like something that could have just been the way he was—his jaw really didn’t look that small. But a cleft palate I’d heard of. A cleft palate was definitely broken. And now we had a name for what was going on: Pierre Robin Sequence.